E-petition on research into Fibrodysplasia Ossificans Progressiva

Fibrodysplasia Ossificans Progressiva (FOP) is a rare, genetic condition whereby soft connective tissues in the body, such as tendons and ligaments, are gradually replaced by new bone (they are ‘ossified’). It is caused by a fault (mutation) in the ACVR1 gene. The condition means that bone develops outside of the skeleton.

An e-petition (564582) on “dedicate funding for research into Fibrodysplasia Ossificans Progressiva (FOP)” calls on the Government to “invest in FOP research to support this ultra-rare disease community”. It adds that research into FOP could also “inform the understanding/treatment of many more common conditions such as osteoporosis, hip replacements, DIPG (a rare childhood brain cancer) and many common military injuries”. At the time of writing, the e-petition had received over 111,000 signatures and is scheduled to close on 7 January 2022. The petition was created by Chris Bedford-Gay, a trustee of the UK charity ‘FOP Friends’.

The Government published a response to the e-petition in October 2021, emphasising that, through the National Institute for Health Research (NIHR) it had “supported one study into FOP via NIHR Infrastructure and seven studies via NIHR Clinical Research Networks”.

The e-petition will be debated in Westminster Hall on Monday 6 December 2021 and will be led by Elliot Colburn MP on behalf of the Petitions Committee.